SESSION II: Treatment considerations
Suzanne Fenske, MD
Endometriosis and sexual dysfunction
Advancing the Science and Surgery of Endometriosis
Monday and Tuesday, April 18-19, 2016
The Union Club, New York
Good morning everybody. First I want to start by saying that I am honored to be invited to speak here today and I am especially honored to follow up behind Dr. Marin who trained me during my fellowship and who taught me most of what I know about endometriosis actually. I want to start by saying that today I am going to be speaking about sort of a difficult topic. For a 15 minute conversation about this it has very limited evidence behind it, which makes it easy and hard to talk about. So let us now talk about endometriosis and associated disorders with endometriosis that result in sexual dysfunction, painful intercourse and painful orgasm.
I have no financial disclosures.
Before we begin our conversation about this, as we all should know in the room, but the definitions behind dyspareunia is pain during and after intercourse; and there is superficial dyspareunia and deep dyspareunia. Superficial is more pain in and around the introitus while deep remains deeper with penetration.
It is always important for me when I talk to my patients about their pain with intercourse basically to specify as to which type of dyspareunia they are mainly speaking about. Pain with intercourse, painful orgasm and sexual dysfunction is a major issue for a lot of our patients. As physicians we tend to focus on what we think we can cure and focus on this first and foremost. So for a lot of us our primary focus remains the chronic pelvic pain they are experiencing, or for some of us, the infertility that they are experiencing. While intercourse becomes an issue that we do not focus as much on in our valuation in our discussions with them it has a major impact on their sex life, on their relationships and on their psychosocial wellbeing as well. We know from the studies that have been done that pain with intercourse and painful orgasm results in decreased number of intercourses, avoidance of intercourse, feelings of guilt for the partner and feelings of blame by the partner. Feelings of resentment, avoidance of relationships, decreased number of orgasms, depression and anxiety and stress overall.
For endometriosis and dyspareunia we have research that shows us that the most common complaints that people report when they come to see you regarding their medical care about endometriosis is their chronic pelvic pain, their dysmenorrhea and their dyspareunia. Dyspareunia is five times more common in patients with peritoneal endometriosis than controls. The question remains for patients with endometriosis how does endometriosis cause dyspareunia for them?
Studies that have been done sort of focus on a few things, implants themselves being painful. We know that uterosacral nodularity on examination when we discuss this that is where the patients feel pain, often when you do your examination. The implants themselves have no nociceptor receptors in them and have an increased number of nerves in them. That could account for the pain that they feel during intercourse. In addition prostaglandins they are associated with endometriosis. We know endometriosis is a disease of estrogen as well as prostaglandins. The overriding theme with endometriosis also remains the question of central sensitization. Is pain overall perceived worse than it is because of a centrally acting reason? Peripheral sensitization and the other thing which I am going to focus on a little bit more of is the concurrent diagnoses of other diseases which can cause dyspareunia.
With endometriosis what do we do that can cause problems with sexual function, dyspareunia and painful orgasm? In our efforts to eradicate an issue we ourselves can cause another problem.
What do we do for a lot of our treatments? We know that we give birth control pills, right, often for our treatment of endometriosis. We know the effects of birth control pills. It decreases estrogen it decreases testosterone, which could decrease libido, could decrease vaginal lubrication and in and of itself cause issues with sexual function.
GnRH agonists – we know we essentially are putting our patients into a menopausal state. So we decrease their estrogen basically to nil as well as decreasing their testosterone resulting in a similar thing. With SSRIs, which often we will give for patients with their concomitant depression or overall wellbeing for them those of themselves we had multiple studies showing that it affects their ability for libido, for arousal and actually to attain an orgasm. Endometriosis is one culprit but physicians are another culprit for this.
I like this slide and I also do not like this slide because it did bring light to one issue that we often see and deal with with these patients, which is the vestibulodynia/vulvodynia category. However it sort of put it into light that the vagina was depressed which it is really not right but it brought it to the surface.
Other disorders we see often associate with endometriosis that can also result in dyspareunia, for many of our patients they have concomitant pelvic floor either defined as tenderness, hypertonicity or spasm. In the chronic state of pain that they are in with endometriosis it sort of goes hand-in-hand with that. For patients with this they will often complain of deep dyspareunia and/or superficial dyspareunia, which we will go a little bit more about why that happens. But for the deep dyspareunia the muscles themselves are very painful for these patients. Other issues that go hand-in-hand with it are painful bladder syndrome, or IC the old category for it where patients actually have pain at the bladder or under the bladder so during intercourse they will feel pain at that location.
Vestibulodynia/vulvodynia so either in some theories iatrogenically caused, vestibulodynia if you believe that birth control pills can affect the vestibule on the effects of the receptors and lack of testosterone or neuropathic or more centrally acting as well. Whether there is a higher centralization to pain for patients who have endometriosis. We know that endometriosis is linked to multiple diseases. We can see the linkage between ____ that define that link to interstitial cystitis, Crohn’s disease, irritable bowel syndrome as well as multiple pain disorders such as fibromyalgia, chronic fatigue syndrome and vestibulodynia/vulvodynia.
The next topic I am going to briefly talk about is painful orgasm, which is an interesting topic. I actually over the past year have seen quite a few patients who have come to me with complaints of having incredible amounts of pain after orgasm to the point that they have avoided sexual intimacy for fear of having an orgasm. When I did my lit research on this when I first started seeing these patients, because it is not something that is often discussed in residency or fellowship, I was really unable to find a lot of literature behind this or explaining this. I actually put this question, or posted this question to another society than I am a member of, the International Pelvic Pain Society forum and really did not get a whole lot of responses back, which shows to me that this is really a topic that is just not really well researched as to why patients have these painful orgasms.
The responses that I got back were somewhat interesting. I actually spoke to a pelvic floor physical therapist with whom I work very often and asked for her feedback and her two cents regarding this. Her focus really was that physical therapy can be very beneficial to these patients. So we may not have a great answer as to why it occurs but she has seen a lot of success with this. In part of her etiologies that she brought up was positioning, which is interesting, that patients when they achieve orgasm or positioning are basically now positioning their bodies which can lead to them having pain. They tend to tense their pelvic floor muscles as well. Questions otherwise would be does vasodilation cause it? Is there an underlying pelvic floor tenderness to it? Nerve issues? Pudendal/ilioinguinal nerves, the local nerve irritation during orgasms, central sensitization. We know there is a release of oxytocin during orgasm, could that play a role in this, especially for patients with endometriosis, and prostaglandins as well.
One of the answers that I received was from Dr. _____ who reported that one option for treatment of these patients is to give them Nifedipine, which was somewhat interesting as a calcium channel blocker and etiology but he had a lot of success with giving this treatment for patients with painful orgasms.
So that brings me to some treatment options and this is more ___ because there are a lot of options for treatments. Patients with endometriosis we know, that actually has been well studied excision of the endometriotic implants, nodules does result in decreased dyspareunia for these patients. For patients with interstitial cystitis, painful bladder syndrome options for treatments for them we know Elmiron we know bladder installations and physical therapy as well. For vestibulodynia this is sort of a difficult topic because there are lots of options out there for treatment and not a lot of data behind what is the most effective treatment for it. But for those patients, depending on the etiology of the vestibulodynia, topical estrogens, testosterone, other compounded medications with inclusions of gabapentin or your TCAs or lidocaine, vaginal dilator therapy for these patients, capsaicin or vestibulectomy. For pelvic floor tenderness we know the pelvic floor physical therapy works really well. There is also data coming out on Botox therapy for these patients as well, and for painful orgasm, pelvic physical therapy, NSAIDs prior to intercourse and questionably Nifedipine.
A final word about this topic in general which is a great quote from Fritzer is that even with treatments…“a principal pathogenic mechanism in dyspareunia is altered awareness of pain recurrence due to previous experience of coital pain. Therefore, the focus during sexual intercourse turns to sensation of possible pain instead of enjoyment”.
So basically even if we treat these patients well and we do good surgery for them for their endometriosis that they still have this learned behaviour of associating pain with intercourse, perhaps a more multifactorial treatment for these patients with inclusions of surgery as well as possible physical therapy, vaginal dilator therapy and/or sexual therapy with a sex therapist.